Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Prayer Request


Fiddle-Faddle

Recommended Posts

Fiddle-Faddle Community Regular

They tried to take him out of the coma, but he had 24 hours of seizures, so I guess they're going to wait some more. They are still trying to find the right combination of anti-seizure meds.

I found some links on the Internet about casein and seizures, and I know that the stuff they tube-feed is whey-based. I wonder if they could tube-feed him donated mother's milk? There are still some milk-banks around the country, though not many.

But last time I suggested it (several years ago when a dear friend was in a coma, and I was nursing a new-born), the doctors acted as though I were suggesting they use other body fluids. (Sigh...)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 60
  • Created
  • Last Reply
Ridgewalker Contributor
They tried to take him out of the coma, but he had 24 hours of seizures, so I guess they're going to wait some more. They are still trying to find the right combination of anti-seizure meds.

I found some links on the Internet about casein and seizures, and I know that the stuff they tube-feed is whey-based. I wonder if they could tube-feed him donated mother's milk? There are still some milk-banks around the country, though not many.

But last time I suggested it (several years ago when a dear friend was in a coma, and I was nursing a new-born), the doctors acted as though I were suggesting they use other body fluids. (Sigh...)

:( I just don't get why they should be appalled by that suggestion. Human milk makes a heck of a lot more sense than milk for baby cows. :(

Mtndog Collaborator

Oh man.....i hope they get a clue. I'm praying for him.

Fiddle-Faddle Community Regular

Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

Ridgewalker Contributor
Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

Can always spare a moment. Hugs!

Cheri A Contributor

What does septic mean?

Saying a prayer for Noah, his caregivers, and his family and friends.

Fiddle-Faddle Community Regular

More than you probably wanted to know:

Sepsis

From Wikipedia, the free encyclopedia

Sepsis is a serious medical condition characterized by a whole-body inflammatory state caused by infection.

Traditionally the term sepsis has been used interchangeably with septicaemia and septicemia ("blood poisoning").[1] However, these terms are no longer considered synonymous; septicemia is considered a subset of sepsis.[2]

Signs and symptoms

Symptoms of sepsis are often related to the underlying infectious process. When the infection crosses into sepsis, the resulting symptoms are that of systemic inflammatory response syndrome (SIRS): general inflammation, fever, elevated white blood cell count (leukocytosis), and raised heart rate (tachycardia) and breathing rate (tachypnea). Secondary to the above, symptoms also include flu like chills.

The immunological response that causes sepsis is a systemic inflammatory response causing widespread activation of inflammation and coagulation pathways. This may progress to dysfunction of the circulatory system and, even under optimal treatment, may result in the multiple organ dysfunction syndrome and eventually death.

[edit] Epidemiology

In the United States, sepsis is the leading cause of death in non-coronary ICU patients, and the tenth most common cause of death overall according to data from the Centers for Disease Control and Prevention.[3] Sepsis is common and also more dangerous in elderly, immunocompromised, and critically ill patients. It occurs in 1%-2% of all hospitalizations and accounts for as much as 25% of intensive care unit (ICU) bed utilization. It is a major cause of death in intensive care units worldwide, with mortality rates that range from 20% for sepsis to 40% for severe sepsis to >60% for septic shock.

[edit] Definition of sepsis

Sepsis is considered present if infection is highly suspected or proven and two or more of the following systemic inflammatory response syndrome (SIRS) criteria are met:[4]

* Heart rate > 90 beats per minute

* Body temperature < 36 (96.8


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

I am so sorry to hear this. You are all still in my prayers daily.

irish Contributor

I will certainly pray for him and his family. Loretta

little d Enthusiast

My daughter and i will say prayers for his family

donna

  • 1 month later...
Fiddle-Faddle Community Regular

I update this with tears in my eyes. I don't even know what kind of prayers to ask you guys for. I received this yesterday from Noah's dad:

"Thank you for all of your kind words, thoughts, prayers and actions. I know that Noah would truly appreciate all of the support he has been given. Unfortunately, for all of us, his case prognosis does not look very good at all. IF, and now it is a big IF, he is able to come off of the heavy sedation drug, he is still not aware or awake of his surroundings. They believe that he will have severe neurological deficits in terms of motor control and function, as well as cognition. The Noah we all knew and loved is never coming back to us. We are not sure if any version of him will ever return to us either. We continue to be hopeful, yet the reality is becoming all too true. We are now hoping that Noah will declare himself, rather than us having to make an unthinkable decision.

Thanks again for your support. It helps sometimes to write things out, because saying them aloud is too painful."

lonewolf Collaborator

I will pray for their family and the decisions they have to make. My heart breaks for them.

wolfie Enthusiast

I am so sorry. I will pray for Noah and his family.

confused Community Regular

I am so sorry for what they are going threw. I continue praying for noah and the whole family. I cnt even imagine how hard this is on all of them.

paula

Cheri A Contributor

:bawling:

My heart is breaking for Noah and all who love him. Many prayers.

taweavmo3 Enthusiast

I will be praying for this family......I used to work in a pedi ICU, and it is gut wrenching when families have to make the agonizing decision to take their child off life support, especially after such a long fight. I can't even imagine the pain they are in, no parent should ever have to go through that. I'm so sorry to hear he isn't doing well, I will be praying for the family, as well as yours. This must be difficult for your son as well, how is he doing?

AndreaB Contributor

We'll keep the family in our prayers through this difficult time. :(

Lisa Mentor

Peace for Noah and his family.

jerseyangel Proficient

I am so very sorry.

I will continue to remember Noah and his family in my prayers.

Cheri A Contributor

I was thinking about Noah and his family. Saying a prayer for them today, and for all of the medical staff caring for him.

ravenwoodglass Mentor
I update this with tears in my eyes. I don't even know what kind of prayers to ask you guys for. I received this yesterday from Noah's dad:

"Thank you for all of your kind words, thoughts, prayers and actions. I know that Noah would truly appreciate all of the support he has been given. Unfortunately, for all of us, his case prognosis does not look very good at all. IF, and now it is a big IF, he is able to come off of the heavy sedation drug, he is still not aware or awake of his surroundings. They believe that he will have severe neurological deficits in terms of motor control and function, as well as cognition. The Noah we all knew and loved is never coming back to us. We are not sure if any version of him will ever return to us either. We continue to be hopeful, yet the reality is becoming all too true. We are now hoping that Noah will declare himself, rather than us having to make an unthinkable decision.

Thanks again for your support. It helps sometimes to write things out, because saying them aloud is too painful."

I am just seeing this now. I am so sorry things look so bleak. I will continue to pray for Noah and his family. Miracles do sometimes happen. I am praying for one here. When I was 11 and in a coma my family was told the same thing. All we can do is pray and wait.

Fiddle-Faddle Community Regular

I can't bear to write this, but--Noah died earlier today. The funeral will be on Sunday.

If anybody has any advice what I can say to his parents that might actually be comforting, please let me know....

taweavmo3 Enthusiast

I am so,so sorry......poor baby. I can't imagine the agony the family must be in right now. Definately makes you realize how precious life is, we can't take for granted the time we have with our children. Rest in peace Noah.

lonewolf Collaborator
I can't bear to write this, but--Noah died earlier today. The funeral will be on Sunday.

If anybody has any advice what I can say to his parents that might actually be comforting, please let me know....

You hug them, cry with them and say, "I'm so sorry". I don't think that anything could be very comforting at this time. I know that they will appreciate your sympathy and tears. I'm so very sorry for them - I can't imagine losing one of my children and at this time of year too... I have tears for them.

Glutenfreefamily Enthusiast
:( Im so sorry, my prayers are with noah and his family.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.